I have Severe Hemophilia and had a total Knee replacement!

The following article was written by our first guest blogger – David Simmons. It chronicles his decision on getting a knee replacement despite having severe Hemophilia. 

davidsimmons

I had always known, following an inability to get rid of a stubborn limp after college and upon receiving several opinions from orthopedic surgeons, that I would someday require total knee replacement surgery.  My left knee had become a “bone on bone” situation after many episodes of repeated bleeding into that joint as a child.  Over time, the amount of cartilage remaining in the joint slowly diminished.  I remember one physician who took a glancing look at my x-ray and simply exclaimed, “ugh”!  Being a 34 year old severe hemophiliac, I naturally had concerns about how such an invasive procedure would affect my life, my ability to work, and to participate in activities that are important for fathers to participate in with their children.  Are the results guaranteed?  Certainly not, as with any surgery, the procedure comes with certain risks.  However, the potential benefits of the surgery, in my opinion, far outweighed any risks involved, even for a hemophiliac.

Approximately one year prior to my knee surgery, which took place in December 2008, I had contemplated the surgery but ultimately did not execute.  One of the main reasons I decided not to go forward with the surgery at that time was my physical condition.  At the time, I weighed nearly 220 pounds and generally felt tired and out of shape.  Over the next year, I committed myself to following a regular exercise regiment which I still follow today.  I never knew how much exercise can make a difference in the way you feel on a day-to-day basis.  Yes, there is one form of exercise you can perform as a severe hemophiliac with a blown knee…swimming.   As I continued swimming, I gradually benefited from more energy each day, a lower weight, and a trimmer waistline.  I felt that it was important to be in good physical condition to have the best chance for the knee replacement surgery to be a success.

Even though I knew I needed the surgery sometime in the next few years, I had no idea that the surgery would be occurring so soon.  An opportunity had emerged at work whereby the senior managing partner at the commercial real estate firm I work for would be gone for an extended period overseas.  Since I report to this partner, it was the perfect opportunity for me to work-from-home, to the extent possible, while recovering from the surgery.  I was told that it is often a six-week period that patients are not able to return to work.  The idea was met positively at work, so I decided to go ahead with the surgery; however, getting on a surgeon’s schedule on short notice at the end of the year is easier said than accomplished.  Many patients choose to have surgery over the Christmas holidays because they have extended vacation time and also want to get the surgery done prior to the end of the year to avoid paying the full amount for deductibles and co-pays in connection with their health insurance policies. I had to beg and plead with the various doctors, nurses, and rehabilitators to get everything lined up within a two-week period of time or else my window of opportunity would soon close.

With regard to the surgery experience, it was about what I expected.  I was nervous prior to the surgery, but everything went very well and the surgeon gave a good report to my wife and mother, both waiting anxiously in the waiting area.  Part of the precautions taken for any surgical procedure taken on a hemophiliac involve having clotting levels at 100% for a sustained period of time.  I was very concerned about the frequency of my infusions of Factor VIII, and was becoming aggravated with the nursing staff who didn’t completely understand how important the timing was for the infusions.  They would often show up 30 minutes to an hour after the scheduled time.  Although I’m sure an hour either way doesn’t make much difference, in my mind, I wanted everything to be right on schedule.  After all, I really needed my knee to work for me.

 Did it hurt?  Well, I was fine until the anesthetic injected into the knee during surgery wore off.  It was Christmas day and my wife and children were there with me, in the hospital room, opening presents.  I remember how difficult it was to tolerate the pain in my knee while trying to hide may pain from my children in an effort to keep the focus on them.  After a narcotic mix finally arrived, I had some relief.  The difficult part of the pain experience persisted for about a week after surgery.  It was difficult to be totally comfortable and physical therapists always expected more that you could deliver.  However, the paid did subside a bit, and I did slowly begin to gain more range of motion in my knee.  After a 4 day hospital stay, I went home.

My rehabilitation at home involved an in-home visit from a physical therapist a couple of times per week followed by outpatient physical therapy sessions for about two additional months.  The sessions involved low impact repetitions of muscle strengthening exercises followed by stretching.  The stretching exercises were sometimes painful, because the therapist would often need to “break through” a point in the range of motion where I had difficulty meeting the goals.  For the first few weeks, I used a walker to get around the house.  After a while, I ditched the walker for a cane.  Finally, I ditched the cane.

Now, my knee freely swings through a normal walking stride without pain.  Although my muscles surrounding my knee are still much smaller than the muscles surrounding the other knee, they will eventually gain mass and strength.  Whatever limp I once had is now severely diminished.  The pain I once experienced in my knee on a daily basis and at night when I would sleep is now gone.  I am now able to walk longer distances, stand on my feet longer, climb stairs, play low-impact sports and other activities I could not perform prior to the surgery.  Although the prosthetics will always need to be reevaluated by x-ray and precautions taken to avoid any infection around the knee, I feel that the absence of the daily pain that I once had and my increased physical ability far justify any issues that I may have to deal with concerning the prosthetics.  Overall, I am very happy with the outcome and would make the same decision were I to have the choice again. 

Written By David Simmons

26 Responses to “I have Severe Hemophilia and had a total Knee replacement!”

  1. I’m glad to hear that you are doing well since ur knee replacement.

  2. Thats good man I ‘m really happy for you…..I know the pain all my life was tied up with it I was born in a third world country where sometimes its even hard to get anti pain Medicine, Ice….and so on. when i get the chance to came to US I cant tell you how how happy i was cause at least I can get the anti Hemophilia factor (which i did), I feel sorry though for my blood brothers whom i left them back home where they can”t find any help. Thanks Bro it really helps because right now I was thinking to do both my knees and my right Elbow , but I get nervous when i think about it. Thanks And God bless America!

  3. really helps because right now I was thinking to do both my knees and my right Elbow replaced , but I get nervous when i think about it. Thanks And God bless America!

  4. David, I am glad to hear that your replacement went well. I on the other hand had a much different experience. After researching the topic and 2 opinions, I had made the decision to have the much needed total knee replacement In December of 2008. The surgery appeared to have gone well, but I started bleeding into my thigh which resulted in scar tissue around the joint and in my thigh muscle (painful). My expected 3 day hospital stay turned into a 12 day hospital stint with complication after complication. In January of 2009, I was scheduled for Orthoscopic surgery to remove the scar tissue. It appeared the surgery went well but immediately following I noticed additional and more severe pain. My siatic nerve was punctured while a doctor was attempting to give me a pain blocker. I know have Peripheral Nuerothopy/Sensory nerve damage in my foot and ankle. I have been in physical therapy since January 09. My range of motion is far less than (125 degree)before the surgery. I am currently at 92 degree bend and the therapy is excruiating as they attempt to tear the scar tissue manually. I am learning to adjust my life style and it is difficult. I am not ready to accept this. I do not want to scare anyone with my story. It is just that my story. You must look at all the variables surrounding your situation, just know the flip side. Now, I was educated about my condition by one of the best (Dr. Jack Spevack, University of Iowa) but I now have gained another level of education/experience. I am seeking advice from anyone listening/reading this blog. My current state is scar tissue under my knee cap, partly in my quad and possibly in other parts of my joint. My surgeon has suggested a third surgery to try and gain more motion but I have lost faith in my Hemotologist and quite frankly real unsure about a third dance. I am desperately seeking information to possibly correct this problem. If anyone knows of any procedures, surgerys, doctors or advice please let me know. I feel very blessed to have run across this site. I wish you all well.

  5. Oh yes, I am a mild Hemophiac/ Factor 9 deficiency

  6. David,

    I am thrilled to read this! I am so happy for you.

    I look forward to seeing you at Casino night.

    Take care,

    Alan Brush

  7. Hi!,
    How much did it cost you in doing the proceedure?

    Im a bleeder also.

    regards,

    Mike

  8. Mike,

    All I was out of pocket was co-pays for the physical therapy which ran me about $75 per week for about 3 months. The hospital bill was $100k which included the surgeons fees, anesthesia, factor while in the hospital for 3 days, plus all the other things that hospitals charge you for. My insurance company picked up the tab at some amount that was pre-negotiated and less than the total $100k. I had to keep heavy doses of factor going for the first month and a half and intermittently during therapy. I have not added up the factor costs, but I’m sure it was a blow to my insurance provider.

  9. George,

    I am so sorry to hear about your experience with your knee. I understand your frustration and hesitation with a third surgery. I would be interested in hearing an update from you if you get a chance to post. If things haven’t improved for you, I could recommend seeing my doc. I had seen two other surgeons before pulling the trigger with the guy I went with, but he was the only one who explained things in a way that I felt comfortable moving forward. When I left his office, I had no doubts that I was making the right decision based in part on my doc’s experience with knee replacements (several in week booked 4-6 months out), plus his confidence level that the surgery would improve my lifestyle and eliminate pain.

  10. i am a 31 yr old hemophiliac factor 8 deficiency. i have a bone on bone situation on my right knee which every other month is getting swollen i i have spoken to my doctors and they want to do a tkr on my leg but i am very afraid dont know what to expect

  11. Barbara Olivier - South Africa

    Monday, 15th March 2010 at 1:44 am
     

    Hi just “stumbled” accross your story. My husband who is 36 with severe hemophilia (factor VIII) is also considering knee surgery. I have printed your story and will show him tonight. We are going to see ortho on wednesday to discuss options, very scary, but your story is inspiring. I would like it if you could maybe get in touch, if you have time. Thanks.

  12. I’m in the same boat brothers. 56 years old, severe factor VII, triple H. Iv’e been bone on bone in the right knee for many years and I just can’t put off the TKR anymore. It swells and puts me on crutches more and more frequently. It is really beginning to drain me of my vitality for life. The last time I was ready to do this, I got scared off by a well respected surgeon at Mass General Hospital who told me that “not too many things scare him, but that a knee replacement on a hemophiliac scared him.” He said that he had studied the research and that he felt there was close to a 50% chance of infection and that I could “very possibly end up with an “amputation” I have since received other opinions which disagree and put the risk factor closer to 17%. That’s really not much comfort, but at this point, it doesn’t matter. I really can’t go on this way, with the constant limping, pain and swelling. I am going to get a final consult at New England Baptist and I am planing, if possible, to proceed with the surgery ASAP. I will keep you all posted. I’m glad i found this blog. Thank you too my brothers and others for continued posts

  13. Hi
    I’m a mom of a 20 yr old severe hemophiliac son who would like an elbow replcement. We live in the Boston area and my son’s Dr’s do not advise a replacement. Did New England Baptist offer to do the knee replacement surgery? I’m just trying to do a little more research to see who may have more experience in replacement surgery for hemophiliacs.

  14. Peter, your doctor falls in the category of those who fear the liability. I bumped into several of those before finding a doctor who was confident in his ability to make it work. Yes, there is an increased chance of infections for hemophiliacs, but if the bleeding is controlled carefully with high levels of factor, it reduces that risk down to almost what a normal patient would have. If the word “amputation” comes out of your doctor’s mouth, I wouldn’t use him/her. If you want to have the surgery in Dallas, then contact me and I will give you my doc’s name and office number. He specializes in knee replacements and has performed knee replacements on other medical professionals in the area.

    Michele, elbow replacement technology has not matured. Elbow pain is a problem, but at least your son doesn’t have to bear any weight as in a knee or hip. If it were me, I would wait as long as possible on an elbow replacement to let the technology mature a bit more. I put up with the pain in my knee for 20 years or more before pulling the trigger. Probably should have done it earlier, but I wanted to make it last as long as possible into my later years.

    To all, don’t let your doc tell you to hold back on the physical therapy due to the hemophilia. That was key for my recovery, but it took a ton a factor and pain management to get past that. You have to continue breaking up the scar tissue that forms after surgery around the joint. Do exactly what other patients do to recover successfully. It’s worth it in the long run.

  15. Nice story David. Several questions:

    1) Do you have to take antibiotics for dental procedures now?

    2) Did you need factor prior to every PT appointment? I feel like you probably would.

    3) Do you still get bleeds in that knee or does that go away after the procedure.

    4) How did you get off so cheap for $100k? I had a hernia repair and was in the hospital for 2 days and it ran almost that much.

    Thanks, David.

  16. Hi David, So glad to hear of a great outcome. Our grandson is 2yrs old and has severe hemophilia with an inhibator. Our daughter thinks he might have a hernia. They live on Kauai in HI and the medical is not so great there. He has to be flown over to Oahu to the children’s hospital. He has a port in now for his infusions. He takes Factor VII because Factor VIII doesn’t work on him. Our daughter is the carrier and we just found out that our other daughter is also a carrier, our oldest son does not have it…….as they say, he dodged the bullet. It comes back to me as having the gene mutation, so this was all just discovered in the past year and a half. It is good to see a picture of a good looking healthy young man. It is important to me to see that he can have a great and happy life and you are proof to me. I feel much better seeing your picture and reading your story. My Dad recently had that same knee replacement surgery. OUCH!!!!!! But he is able to do alot more, he just turned 82 this week. Once again, good luck to you and your family you are a hero in my eyes.

  17. This, my second post is being composed on my laptop, while in the hosptial bed after having had my TNR last Thurday. David, I totally agree with your thoughts about some doctors having a fear of liability. I am a lawyer, so I guess that should have occured to me.It’s only been three days,since the sugery, but I am already glad that I didn’t let the other doctor scare me off (see former post).I am at Boston’s Beth Israel Deaconess Hospital and I think they did a great job.I am truly looking forward to being able to do some of things I have been unable top do for so many years. For starters, Just the thought of being able to walk up and down the stairs without having to go one step at a time is really exciting. I know iv’e got a lot of hard work in front of me with the rehab. But I am very commited to doing my part, whatever it takes.David, how are you doing these days? Have your muscles cotinued to grow stronger and larger? If you come accros this forum again, please give us an update.

    Thank you all for your kindness and support.

  18. I’m really gald to have come across this site. I am a 35 yr old hemophiliac,factor VIII,and I am concidering a tnr. I’m very afraid of the outcome tough. My brother also has the same problems as me, and he had a tnr last year,which resulted in an infection that could not be controlled,and they had to end up amputating his leg from the top of the knee down. I would appreciate any advice from any other hemophiliacs that have had a tnr. I really want to have it done, the pain and swelling I have now just doesn’t seem to stop. Thanks, Wayne

  19. hi david,im vahab, im 23 yrs old, and i have hemophillia A- imean severe, im from iran, unfourtunately our country didint mention in the powers of the world, but the good thing here is that our Factor 8 supply is free in our country, so if i have operation on my knee my factor8 will be supplied freely, but i have questions from u david, did u have bleeding in ur knee after surgery ? , did u walk easily? without pain? and how many years this joints will work for us?-i know it was depended, but is it about 20 years?

  20. Hi Vahab,

    That is awesome that your factor is free! The only bleeding I ever have is from the scar tissue I developed around the knee after surgery. That will occasionally tear and create small bleeds in the muscles above the knee cap – not into the joint. They are easy to treat and you may not ever have the same problem. My knee was done 12 years ago and is still in excellent conditions. The knees they have now are much improved so I am sure you should get at least 20 years out of yours unless you have problems of some sort which you shouldn’t. Good luck and thanks for visiting our website!

  21. david praise the lord for your story i am so glad to here that you are doing so well after your surgery. i have a 26 year old who had tkr on 3-23-11 he has severe hemophilia and it has been a nightmare. we was told that they would make sure that his hemophilia would be watched closely and that they would not let his levels drop to low. we lost faith in our doctors when not only did they let his factor level fall below 50. the day after surgery he was in icu because they didn’t give him enough factor before surg. and he started bleeding from where they had the tubes and he asprated and was coughing up blood for 9 days and had to be put on oxygen. and i asked the nurse when his next dose of factor was due and she said that the doctor had stopped it and he didn’t have anymore ordered. this was the day after surg. and i had been up with him all night washing out the pan he was spiting up blood in and listening to him gurgle and gasp for air. and his dressing on his knee was soaked with blood. i told her i wanted to see the doctor now. i couldn’t believe it and not only did he stop the factor they gave him a shot of blood thinner in his stomach. they said that they were worried about blood clots. at that time i wasn’t thinking about blood clots. all i was thinking about is that he needed his factor. we had problems with the doctors the whole time he was in there about his factor. and they knew his factor level is less than 1% and we still had to beg them to let him have it. one doctor said ok but blame us when he gets a blood clot. this was after we had them to stop the blood thinner because his i v messed up and when the nurse pulled it out blood sprayed across the bed. his leg kept a bleed in it just about the whole time we were in there. every time he would try to do pt it would get a bleed because he was not getting enough factor. he is home now after being in the hospital for 12 days (seems longer) he is taking his factor like his doctor here told him to and he’s doing a lot better praise the lord;still having a lot of pain though. its been about 3 weeks when will the pain get better? and how long will we have to worry about blood clots. i have enjoyed all your post and my prayers are with you all.

  22. Hello, I am 39 with severe Factor IX. I have chronic joint disease in both knees, right elow and right shoulder. The elbow and shoulder I can lie with but my left knee has become an increasingly difficult burden to bare. I have asked many times about knee surgery and each time I always get, “surgery on you would have to be life threatening to even be considered”. That was from my old doctors. Due to other reasons I changed to doctors in another larger city who have offered hope in other aspects of my life. As a result of these posts I plan to press the matter with my new doctors. From what I gather from all the posts it all boils down to the doctors you have or obtain for the procedure. I will update as I receive more information. All I know is I can’t function much longer with each day each step resulting in a variying degree of pain.

  23. I am the mother of a son who is 30 yrs with severe VIII Hemophilia. He has had knee problems for years and is considering knee replacement. He has seen several doctors in San Francisco but wasn’t satisfied with them. Anyone who has had the surgery (David, Peter, etc) please advise where you went and which doctor you saw — surgeon & hematologist.

  24. I have been meeting with surgeons and my Hemotologist this summer. The surgeons both say they are ready but the BIG obstacle that my Hemotologist is very nervous about is my inhibitor. I have full confidence with these teams of doctors (Vanderbilt hospital, Nashville, TN) that if there is a way they will find it.

    Has anyone who has had the knee repplacement surgery or are in the process of having it done, had problems with an inhibitor?

  25. I am a 40 yo severe factor IX hemophiliac. I had a tkr in July of 2009. The process is very painful but worth it if you have good doctors and support staff. First, dr. Escobar, gulf states Hemo clinic. Second is the surgeon, Rodney plaster in Tulsa Oklahoma at a clinic called eastern Oklahoma orthopedic clinic. He invented a new joint that will last longer than twenty years because the bone grows into it! if you all have questions I am happy to share my experience.

  26. Well the day finally came. Had tkr surgery of my left knee 9/20/2011. Everyone (including myself) was pleasantly supprised that the surgery was completed with zero issues. It has been nine days nine and I am still on my schedule for Factor (NovoSevenRT Factor VII) every six hours coupled with pain medication every 4 hours.

    Pertinent information:
    Sate = TN
    City = Nashville
    Hospital = Vanderbuilt University Hospital (VUH)
    Hematologist = Dr. Ann Neff
    Orthopedic Surgeon = Dr. Andrew Shinar
    both of VUH.

    The PT, or course, is the hardest to manage. Is very difficult to balance the needed muscle and joint working and stretching and the high risk of injuring the knee.

    Facebook photo postings listed here:
    http://www.facebook.com/mitchell.latham

    I would be happy to answer any questions share my ongoing experience with anyone curious.


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